Wednesday 11 May 2011

That Proverbial 'Bad Back'

Goldfish has already had one pop at this BBC article, but I want to pick it up on a specific point and look at it on a little more personal a basis than I would normally use for WTB.

"during that time there was a widespread belief that back pain could be long-term and could seriously incapacitate people.

Now, people are aware that if they strain a muscle they can be better in a few weeks, Professor Coggon said."

Alleluia! Praise the Lord! I'm cured!

Or maybe not. Maybe there's more to it than the 'good' Professor Coggon is letting on.

We've been seeing a lot of this in the past few months, disabling conditions deliberately undermined to outrage the Tabloidigentsia. Cystic Fibrosis - cough. Epidermylosis Bullosa - blisters. Prader-Willi Syndrome - obese. It's bad enough when they target the rarer conditions without the weight of numbers to enable the people with them to fight back, but a constant in the background statistics when people with these conditions are derided are the far larger figures for 'depression' and 'bad back', with the unspoken intimation that these are just as false. I don't really have the background to discuss clinical depression beyond being sadly aware of how badly skewed are the opinions of the vast majority in our society towards it, but 'a bad back' I have known intimately for twenty-odd years.

The first thing to notice is the labelling, always 'bad back', never 'spinal injury', because that deliberately taps into the undercurrent of belief that we are all shirkers and fakers. Most people have had some experience with back pain, some will even proclaim that they 'suffer with their back', but almost always there will be the implied 'but I cope and so should they'. Then along come tame experts like Professor Coggon, proclaiming that back pain can be cured, if you really want to be cured.

Strangely enough the hired guns always seem to be occupational health doctors, the ones whose bread and butter comes from saying what industry or government wants of them, you never seem to see a spinal surgeon or a pain management specialist up there rubbishing the reality of these disabilities.

A soft tissue spinal injury may have a good chance of healing in a few months, but for many people that healing never occurs, because it isn't simply a pulled muscle - thanks for that one, Professor Coggon! Let's really undermine the shirkers with the most trivial injury imaginable - it's a much more complex situation involving injuries to muscle, bone, nerves and discs. There's a wonderful phenomenon called 'neuroplastic remodelling' in which the spinal cord rewires itself to make pain normal, even if the original injury is gone. Then there's Chronic Pain Syndrome, which is a label for pain that continues longer than 3 months without clear physical cause. Or Facet Joint Syndrome, which is pain from damage to the facet joints at the tip of the wings of the vertebrae, Or Degenerative Disc Disease, in which the discs slowly narrow and can burst, while the vertebrae grow arthritic spurs of new bone, all of the changes constricting the space through which the nerves are meant to pass. And so on. A whole medical speciality's worth of long term conditions that won't magically go away in three months because some hired gun who specialises in 'Occupational Health' says that they should. Even 20 years on I don't really have a clear diagnosis for everything that's going on, my local rheumatology department recently told me they don't actually have anyone qualified to assess my complete set of spinal issues. And I'm far from alone in that. The absence of a definitive diagnosis even after decades of seeing specialists is not a cause for suspicion, it is a recognition of the sheer range and complexity of spinal injuries.

"If it was real it would show up on an x-ray, or an MRI" the self-proclaimed expert in the pub or the office will often claim. Unfortunately self-proclaimed is not the same as actual. I had so many x-rays in the years after I initially became disabled that I was starting to worry about glowing in the dark, never mind cumulative dosage, yet they showed nothing and my consultant was visibly stressed at his failure to isolate the cause because he could see my disability was very real. It finally took a full body bone scan with radioactive tracer to get even a hint of what was going on, and if the problem had been solely neurological, for instance through neuroplastic remodelling, then not even that would have been true. My more recent c-spine problems do show up on MRI, but it was four years from onset of C-spine problems to getting that MRI, 21 years on from first presenting with a clear spinal injury. After 22 years of spinal problems that remains the only spinal MRI I have had, and the analysis makes no reference whatsoever to my still very disabling lumbar spine problems (though it does point out incipient problems in four other major joints). Scans and X-rays are not magical, they do not automatically locate every possible form of spinal injury, sometimes spinal problems are only apparent during dynamic movement or at certain positions, not the neutral postures used for scans and x-rays, and often we have to fight for anything more than the most basic x-ray, and sometimes even that.

Even if we can get people to accept that our disabilities are real, we then face the difficulty of getting them to admit that they are actually disabling. Auntie Agatha may 'suffer terribly' with their back and run three marathons before breakfast, and everyone with an opinion is delighted to explain how they had a bad back once but worked through it, but the reality of long term spinal injuries is in an entirely different dimension to anything most people will ever have encountered. The problem we face is that pain is invisible and that long term pain doesn't go away, it's there one damned day after another. If you're dealing with it every day then whinging about being ill and in pain isn't an option, life goes on and I look the same whether I'm pain free or whether it feels like someone has rammed a dagger into my spine and is laying into it with a sledgehammer. We are often talking about degrees of pain that most people never imagine, never mind encounter, about feeling like bones are sheering apart, or like you have a second degree burn across substantial (and sensitive!) parts of your anatomy. Yes, there are painkillers we can take, all with their own side-effects, but they aren't a solution, when I talk about hammering daggers and extensive burns, those are the sensations with the opiates, not without!

'Surely there's an operation for that?' people ask. Not necessarily, is the unfortunate answer. There's that inconvenient absence of clear diagnoses, for one thing, it is difficult to know what to cut if you don't know what's causing the problem. Then there is the unfortunate reality that cutting may make it worse -- 'Failed Back-Surgery Syndrome' is a very real diagnostic label -- or cause problems at a different level of the spine - a common treatment is to fuse two or more vertebrae into a solid lump, but that simply causes extra stress to the joints on either side of the fusion. Then there are neuroplastic remodelling and Chronic Pain Syndrome, which are by definition independent of any musculo-skeletal clause. Similar problems occur with physiotherapy, which tends to be focussed on those simple pulled muscles and thrashes about in the dark when faced with any more complex problem. Over the years I've had back classes, traction, bracing, manipulation, hydrotherapy, you name it, they've tried it with me, but with no evidence of any joined-up thinking to link one set of treatment to another and try and work out a systematic approach. Eventually those of us who are lucky end up being referred to Chronic Pain Management teams. That is an explicit acknowledgement that the pain isn't going away, that the disability is here to stay and that no more active intervention is envisaged. Forget cure, hello coping.

So the next time Cameron, or Clegg, or Grayling are ranting about how ridiculous it is that people have dared to be disabled for more than 3 minutes without being cured, and there's that big set of statistics on the screen behind him, with 'depression' and 'bad back' highlighted for all to see, remember that the reality you need to consider isn't the one they're painting, it's mine.


  1. "The absence of a definitive diagnosis even after decades of seeing specialists is not a cause for suspicion"

    This, this oh so much this, and not just for backs. The fear of persecution from being undiagnosed, especially with the current climate from government and the media, can be immense.

  2. Thank you for that article, for once someone has put in words what I have been living with for years, despairing to ever know what is the problem which started when I was 11 years old. The recent discovery that I have something called Marfan Syndrome "may" explain it when I go for an MRI next week if it turns out that dural ectasia is to blame, but we can't even be sure that will be the answer. What I do know is that at 48 I am walking (well, shuffling) like an arthritic 90 years old, that even on morphine matches, they make the pain barely tolerable and that by god, I wish there was a magic solution! I'd gladly give up "all" those benefits, the mota car and all just to be able to function normally, just to be able to have a good night sleep without the pain that just turning causes me.

    Thank you again for sharing your pain, it made me feel a little less alone in mine at least for a while. :-)

  3. REally good article. I'd just like to add that my husbands 'bad back' turned out to be Multiple Myeloma. A bad back is often the first symptom of this terminal cancer although remission happens it always comes back as it has in my husbands case. He is now held together by titanium rods and is in a lot of pain but is still alive and living in fear of loosing his benefits. I too get really mad when I see the way the media talks about the bad back.

  4. @Anonymous: There are lot of us on Ouch with EDS/Hypermobility, which overlaps with Marfans, so if you have questions that need answering:

  5. This is a discussion I have had many times. It seems to me that most people are far more sympathetic to disabling symptoms that are totally out of their experience (such as seizures) than symptoms which are superficially similar to 'normal problems' such as back pain, fatigue, headache and nausea. However, in my personal experience the later can actually be more disabling.

    I've had a "bad back" in the ordinary sense since my teens, with various muscle pains that would sometimes require a painkiller or a short course of physiotherapy etc. This seems to run in my family and is experienced by many people. It is unpleasant and painful but rarely truely disabling and whilst it might sometimes prevent physical work, any person using this kind of "bad back" as a reason to avoid work long term should be considered fraudulant.

    However, in the last few years I have experienced two totally different kinds of "bad back", both of which are extremely disabling and have left me hospitalised for over a week at a time and almost completely unable to move.

    One was a disc injury impeding my spinal cord. This was more painful than I could ever imagine would be possible, despite the IV morphine and was so terrifying that when I finally left the hospital I had PTSD from the experience.

    The other was severe autoimmune inflammation of my sacroilliac joints accompanied by a high fever and vomiting.

    These kinds of bad back (and others) are completely different to the 'normal bad back'. Comparing them is like comparing a paper cut to amputation or a bee sting to a gunshot wound!

  6. This is such a valuable post! I'm another who has a 'bad back', but mine is caused by both ankylosing spondylitis and chronic spinal degeneration (osteoarthritis). My ank spond affects more than just my back, but for a flavour of my kind of 'bad back', consider I have to use oxygen due to restricted chest expansion (ie my rib cage doesn't expand as much as it should and expanding it hurts) and am on a whole cocktail of medication including morphine. I use a powered wheelchair outside but manage around the house, although doing chores in the kitchen brings on excruciating pain (and that's with the morphine!). I also know that there are many people worse off than me with more serious conditions and injuries affecting their back. But all of us have more than just a 'bad back' and to trivialise our conditions just because lots of people experience back pain at some point in their lives is an insult to what we endure every day. Having looked at the proposed eligibility criteria for Personal Independence Payment yesterday (it's available on the DWP website) I'm horrified that it omits all reference to moving around INDOORS and 'forgets' about the need to get into bed, get out of bed, get to the toilet at night when you're full of sleep-inducing medication etc etc. I can see my highest rate DLA care turning into no PIP at all! I just hope that I can convince them that my mobility needs are sufficient for me to hold onto the wheelchair accessible vehicle for which a grant has been agreed by Motability!! The future is frightening; all the goalposts are being moved; there is no security in having an 'indefinite' DLA award; all the support we depend on is looking as if it might be taken away - and the government wonders why we're worried?!? What planet are they on?

  7. If anyone is wondering why most of the comments (5 out of 6 if memory serves) have disappeared, Blogger had a major problem on Thursday and had to roll back to the status on Wednesday night, not just for WtB, but for every blog on the system. They promise they'll reinstate the missing comments as soon as they're able.

  8. And 10 days later the posts finally reappear. About time, Blogger!

  9. Yay my post came back! (second anonymous above). Being rather unwell it took me ages to write that post and required a lot of effort, when it disappeared that effort felt depressingly pointless.

  10. I've added a paragraph to this talking about the problem of scans and spinal injuries. Firstly because I noticed it was missing, even if it was a bit late, but mostly because IDS and his tame minions have now turned their attack of people with spinal conditions and I may want to point people at this.